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Resources for Children with Special Needs

By Nancy Kennedy

Western Pennsylvania is fortunate to have many excellent organizations dedicated to the care, support and education of children with special needs. These organizations help children and their families by providing resources, a broad spectrum of services and numerous supports. They provide these services to children who have special medical needs, as well as to those with developmental delay, intellectual disability, behavioral problems, and mental health diagnoses. This guide presents detailed information about several of the region’s outstanding organizations.

Residential Services
ARC Human Services
Holly Callender, LCSW, Executive Director

www.archumanservices.org

What is the most utilized service that your organization provides?
Arc Human Services provides Residential Services for adults with Intellectual and Mental Health diagnoses.  These homes are staffed based on the needs of the individuals that reside in each home.  Additionally, Arc Human Services provides In-Home, Companion, and Respite Supports under Home and Community Habilitation to children and adults with an intellectual disability.

Are there any services that you offer, that people may be unaware of?
Arc Human Services has a Clinical Department that offers Behavioral Support Services for adults with intellectual disabilities and training to outside entities.  In addition, in conjunction with local school districts, Arc Human Services operates a Student Transition Program for students 16-21 years old.  This program provides a transition experience with specific goals in mind. Students work toward the areas of community/competitive employment and independent living skills.  Last but certainly not least, Camp-Laugh-A-Lot is an all-inclusive camp that is typically offered during the summer and winter breaks for ages 5 and up. It is an inclusive camp for children and adults, which specializes in individuals with intellectual and developmental disabilities and mental illness.  

What would you say is the most significant obstacle that families face in getting the services their child needs?
Families are faced with trying to learn what services are available and how to access the available resources.  Ongoing advocacy efforts and community outreach through school districts, health care facilities, local and state entities and community providers have increased over the years but ongoing efforts are needed. 

What makes your organization unique?
Arc Human Services takes an eclectic, person-centered approach by wrapping services around the individual and family to provide services based on their specific needs. We strive to provide meaning and relevancy to each person we support and recognize the importance of trauma informed care.  Our support staff are trained in trauma informed care and have the ongoing support of the Clinical Department to meet the individual needs of each person supported by Arc Human Services.

What is “trauma informed care?”
When we are "trauma informed" we recognize that individuals seeking service have experienced trauma at some point in their lives as a result of their disability as well as their life circumstances.  This may be trauma from events - hospitalizations or medical interventions, not being able to be cared for by family, bullying by peers - or from systemic issues such as lack of access to care, poverty, discrimination or racism.  By treating everyone in a manner that is respectful and seeking to understand, we ensure that we do not participate in further traumatization.  This is important especially when we support individuals who may not be able to express or share their trauma experiences.

What resource have you found that you would like to share with others?
The Arc of Pennsylvania, the Office of Developmental Programs, Washington County Behavioral Health and Developmental Services, PA Department of Human Services, and the Substance Abuse and Mental Health Services Administration are sources of information for families. Additionally, the Office of Child Development and Early Learning (OCDEL) provides valuable resources for families.

How has COVID impacted the services you provide? How has it impacted the families you serve?
Arc Human Services is a community based provider, so the activities and educational opportunities have been modified to meet the challenges we are all facing at this time.  The Student Transition, In-Home, and Community Participation Programs are offering virtual supports and the use of technology has increased across all services.  All social aspects have been impacted; however, the support staff have gotten amazingly creative in order to promote socialization and holiday festivities.

 

Early Intervention Services
The Early Learning Institute (TELI)
Rebecca DiLettuso, Executive Director

www.telipa.org

What is the most utilized service that your organization provides?
TELI provides Early Intervention services – therapies and services for children ages 0 to 3 with developmental delays. This may include physical therapy, speech therapy, nutrition, hearing and vision services and occupational therapy. Early Intervention is important – your child’s development cannot wait. The first three years are the foundation of brain development and lifelong learning.

What would you say is the most significant obstacle that families face in getting the services their child needs? 
Understanding what Early Intervention is: that it is free, it can occur at home, daycare or at grandma’s home; that it can occur when it is convenient for the parent and child, and that is it the single most important service that a child (birth to 3 years) can receive to make sure they are on track and ready for school. And finally, that most children never need services again after early intervention is concluded.

What makes your organization unique? 
We have been in business for over 60 years working with children, helping them to reach their true potential. Our staff members are seasoned clinicians some of whom have been with teli for over 30 years and have helped countless families and children.

What resource have you found that you would like to share with others?
Our website is www.telipa.org. In addition, we are on Facebook (www.facebook.com/TELIPA) and Linked In.

How has COVID impacted the services you provide? How has it impacted the families you serve? 
We’ve been providing services through virtual, contactless sessions between the family and therapist, using various forms of technology. Like everything else related to COVID, we are experiencing the fatigue of being on the computer and trying to manage work and kids in school remotely. This effort wears on the families that we serve, as well as on the staff.

 

Early Intervention Services
The Alliance for Infants and Toddlers, Inc.

Susan Levi, Executive Director

www.afit.org

What is the most utilized service that your organization provides?
The majority of children enrolled in our Early Intervention Services utilize our Individualized service plans. These children have been evaluated using standardized assessments and a delay or qualifying diagnosis has been identified. The family and Early Intervention team then create a plan specific to the needs of the family and child to help support the child's development.

Are there any services that you offer, that people may be unaware of?
We have an Infant Mental Health Specialist available to any parent or caregiver experiencing Post-Partum Depression or Anxiety. This specialist is available to meet with families at no cost and can also screen their child to determine any areas of delay and refer caregivers to community agencies if there are additional needs. Our Infant Mental Health Specialist is also a certified Child Life Specialist and can help prepare a child for medical procedures, illness support, bereavement support, and more.

What would you say is the most significant obstacle that families face in getting the services their child needs?
During the COVID 19 pandemic, one of the most significant obstacles that our families have been facing is difficulty accessing technology and maintaining engagement over virtual platforms. The birth to three populations of our little ones may have difficulty maintaining focus and engaging with their therapists and service coordinators over Zoom or FaceTime. However, our Home-Based Coaching Model allows for the caregivers to learn new skills and techniques to transfer over to their everyday routines. We continue to try to connect families with County resources to access technology and have created tools to help support this new exchange over virtual platforms.

What makes your organization unique?
Our families make our organization unique! We provide services to families throughout Allegheny County with varying ethnic backgrounds, incomes, and family structure. The services we provide these families is individualized and specific to their routines, activities, and what they would like their little ones to be learning. No two children are exactly alike so our services must be unique and diverse as well to address their needs. We work with the family to find the times that work best and may provide a child's services in their child care agency as well.

What resource have you found that you would like to share with others?
Our organization has created different tools to help families navigate Early Intervention Services on virtual platforms that we hope are helpful. These videos can be found on our website, social media pages, and YouTube. Families can also find other helpful tips on our social media for how to incorporate learning opportunities into their everyday routines and activities.

How has COVID impacted the services you provide? How has it impacted the families you serve?
COVID has impacted our services by removing the face-to-face interactions we so greatly value. Our service moved to virtual platforms in March as a way to keep our families and staff safe. We now offer tele-intervention services that allow us to complete initial visits, evaluations, therapy sessions, and progress monitoring with our families. This has been a difficult transition for all involved and we understand the complexities our families are facing having their little ones attend therapy on a screen. We have also seen a decrease in referrals as many families have had fewer Pediatrician visits where they may have discussed their child's developmental milestones over the past year. The resilience and flexibility of our families and providers amaze us as we navigate these new times.

 

Trusts & Future Planning Services
ACHIEVA FAMILY TRUST

Patty Yerina, Coordinator, Education and Outreach

www.achievafamilytrust.org

What is the most utilized service that your organization provides?
Achieva Family Trust (AFT) provides trust administration for Special Needs Trusts for persons with disabilities. In addition, AFT provides no-cost Future Planning Services for families who are trying to plan for the future of their children.

What makes your organization unique?
As a result of the work we do, caregivers, providers and attorneys have greater awareness that Achieva Family Trust is a “one stop shop”, where they can go for comprehensive information regarding the futures planning process, including government benefits, support services for persons with disabilities, and the use of various legal options such as special needs trusts and ABLE Accounts to protect the benefits of the person with a disability. Our consultation services are provided free of charge and are truly a valuable service to the community at large.

What resource have you found that you would like to share with others - a website, organization, or book?
We partner with many other organizations including among others, Autism Connection, National Alliance for Mental Illness (NAMI), PA Health Law Project, and Achieva’s Advocacy Department, and these relationships allow us to help those we serve find answers to many of their questions.

Are there any services that you offer, that people may be unaware of?
AFT offers a variety of resources for families for Future Planning, including a Monthly Newsletter, “Trust Matters”, a Speaker Series of topics related to disability that are of interest to caregivers and professionals, a Future Planning Guide, referrals to legal professionals to assist with Future Planning, and no-cost consultations for families involved in Future Planning for their loved one. People are often unaware that the services and consultations that we offer are free and open to the public.

What would you say is the most significant obstacle that families face in getting the services their child needs?
In regards to Future Planning for a child/family member, it is generally the lack of information about where to go for help and what are the things to consider when developing a plan. Also, the prospect of planning can be very daunting for families.

How has COVID impacted the services you provide? How has it impacted the families you serve?
The Family Trust views its role serving as corporate trustee for special needs trusts for people with disabilities as essential. Therefore, at this time, we continue to operate and are trying to do so with as much normalcy as possible to meet the vital needs of our trust beneficiaries while at the same time following the recommendations of our public health officials. Our programs and educational opportunities have been modified to meet the challenges we are all facing at this time. Our monthly speaker programs are all held remotely, and due to increased attendance at our programs, we have added more programs to our schedule. We also have continued to give remote presentations to various groups across Pennsylvania.

 

Pediatric Therapy
Children’s Therapy Center. Washington Health System

Steve Datovech, Director

www.whs.org/ctc

What is the most utilized service that your organization provides?
WHS Children’s Therapy Center is a comprehensive outpatient pediatric therapy program. We have the pleasure of providing essential rehabilitation services, Occupational/Physical/Speech Language therapy and Social/Behavioral therapies for children ages birth to 18, and have done so for more than 20 years. The most utilized service that we provide is our individualized therapy sessions. In partnership with parents and caregivers, we work together to understand a child’s needs, personality, and learning style, and use that knowledge to help the child reach his or her fullest potential. Out of all of the services that we provide, Speech Language therapy services are typically the most sought after and utilized.  Speech is something that every parent is acutely aware of and is part of Pediatrician well child visits that incorporate developmental screenings.  Early childhood speech delays are more prevalent and easier to recognize for parents than a delay related to Occupational or Physical therapy.

Are there any services that you offer, that people may be unaware of?
When we are fully operational during non-COVID times, we offer group based programs that are billed through insurance. However, we do have a few self-pay programs that are open to any child in the community, such as a Summer Reading program and a Handwriting Camp. Another service we have is the availability to provide aquatic therapy at WHS Wilfred R. Cameron Wellness Center. We are the only pediatric rehabilitation center south of Pittsburgh that has this modality.  We are also proud to partner with the United Way in providing community based information and resources to the families we serve.  Outside of therapy services, we also provide a lot of fun activities and events outside of normal business hours in order to promote a community based environment at our centers.  For example, annually we have a Sensory Friendly Touch a Truck event in our parking lot in the Fall, a Halloween party and a Spring party for the families to enjoy with us and each other. Children’s Therapy Center staff develop, organize and volunteer their time for these programs and events. Each one of us truly LOVES being part of children’s lives and their development; each child and their family become part of our CTC family.

What would you say is the most significant obstacle that families face in getting the services their child needs?
Navigating the healthcare, community and educational systems and ensuring everyone is on the same page can be overwhelming for families.  One of the main challenges that families have expressed to us is obtaining a consistent day, time and therapist(s) for the multiple services their child needs that also meets the constraints of their personal, work and other family member’s schedules. Fortunately, families are devoted to helping their children succeed in life. It is amazing to see the support systems they develop to overcome these scheduling obstacles to ensure their child gets the services they need.

What makes your organization unique?
There are many facets of Children’s Therapy Center that make it unique.  One of the attributes that sets us apart, that navigating this Pandemic is highlighting, is how fortunate we are to be the only outpatient pediatric rehabilitation therapy provider in Washington County that is owned and operated as part of a larger healthcare system.  Being part of Washington Health System provides us with stability, education, service line collaboration opportunities and other resources that benefit the children and families we serve and our staff as well.  Being part of WHS requires us to adhere to hospital level accreditation standards of care for quality, safety and value in a patient/family centered environment for the services we provide. Clear cleaning standards, a robust supply chain system, vaccinations and continuous access to our infection control specialists are just a few of the many resources we have drawn upon during COVID-19 and these unchartered times. They have allowed us to remain open for in-person services in a safe and efficient manner.

What resource have you found that you would like to share with others - a website, organization, book, etc?
To find out more information about our therapy center along with the services and programs we offer, please visit our website at https://whs.org/care-treatment/childrens-care/childrens-therapy-center/ .

How has COVID impacted the services you provide? How has it impacted the families you serve?
COVID-19 restrictions have influenced our service provision in many ways.  For example, our group based services and aquatic therapy services have been put on hold.  These will return as restrictions on social distancing and occupancy caps are lifted, but unfortunately no one can predict when that may be.  Some children that we provided therapy for pre-COVID-19 discontinued therapy services due to the pandemic or the service limitations that we had to impose.  We think of those children often and hope that the disruption of services does not further negatively impact their development in the coming year(s). We had significant limitations that prevented us from offering virtual services.  This may have been a blessing in disguise though as we have consistently had new referrals from families that were only receiving virtual therapy that recognized its limitations and now receive one-on-one therapy services with us.  Children’s development occurs through play and sensory experiences (touch, movement etc.).  As one parent stated “a computer screen can only take my son so far” in therapy. Families and staff have been diligent in respecting the operational changes we have put in place to ensure a safe environment for in-person one-on-one therapy.  Some of those changes have included staggering therapy start times, completely closing our waiting rooms, utilizing COVID-19 screenings and limiting accompaniment of a child to one adult.  It has been impressive to watch everyone adapt so quickly and I think families, mine included, have really learned to appreciate the extra time we have had with our children over the past year as well.

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